About 8 weeks ago, I sat down at my desk and prepared to speak with Paige Malinowski. Paige is the program manager of the Young Adult Program (YAP) at Dana-Farber and our main point of contact for our Give-A-Sh*t Knit Kit Program. This program is focused on helping young adults deal with the physical and emotional challenges of cancer treatment through knitting. Paige was the person who entertained our out-of-the-box idea to start donating knit kits to Dana-Farber, and she has been our number one supporter as we have grown the program.
I was prepared to talk to Paige about the origin of the program, the reason she ever agreed to help us get it up and running, and the impact that it’s having with young adults at Dana-Farber. We get lots of questions about the Give-A-Sh*t Program, so who better to talk about the program than Paige?! I planned to interview her, draft a blog about it, and post it a week or two later.
Our conversation was fantastic - Paige had so much to say; so many amazing insights. I learned a lot about what young adults go through as they are diagnosed and treated with cancer and why this demographic needs extra support to cope with the challenges of cancer. That was 8 weeks ago.
Since that time, the STIK team (and so many others) lost a dear friend, Annie McNamara Evans, to her long battle with leukemia. Annie was young and smart and funny. She was a wife, a daughter, a sister, and a friend to SO many. She and I grew up spending summers in Kennebunk, Maine, learning to swim and sail at our local day camp. She impacted so many people, mostly by being the sweetest person any of us knew. And on top of all of these things, she was the inspiration behind the Give-A-Sh*t program.
In 2015, Annie’s close group of girlfriends asked Christina to host a knitting party for her after she was diagnosed with leukemia - a girls night to help get her mind off of things. Christina willingly agreed, not knowing the impact that this experience would have on her. Towards the end of the evening, Annie’s mom, Sally, pulled Christina aside and thanked her for pulling the event together. “This is the first time I haven’t thought about cancer since Annie was diagnosed,” she said.
Christina was floored and immediately started thinking of ways that she could help more people like Annie. Within days she reached out to Dana-Farber, was connected to Paige and the YAP team, met with them once, and started donating kits no more than a month later. All of this because of Annie.
The day that I planned to sit down to draft up my interview with Paige, I received the news that Annie had passed away. I can’t make it up - it was the only thing on my to-do list that day. Needless to say, I’ve found myself putting this one off. I couldn’t bring myself to write about this program and Annie and how thankful we are to her to have inspired us in so many ways.
In the few weeks since Annie’s passing, we’ve been in close contact with Annie’s family, and, with their permission, launched (and sold out of) the Annie Beanie. We plan to donate a portion of proceeds from the beanie to the Dr. Robert Soiffer’s AML Research Fund later this month. We’re so honored to be able to do this for Annie and to support Dana-Farber in a different way than we do with our kits.
Over the last 8 weeks, I thought a lot about this program, and why we do it. And here’s the thing, we do it to help our friends, peers, and in most cases, people we don’t even know simply because we can. This program is about being kind and lending a hand to young adults when they are faced with incredibly daunting situations. It’s not for attention or partnerships or awareness - it’s just because it’s a nice thing to do.
We’re more dedicated than ever to continuing our Give-A-Sh*t Program. If you want to learn more about what you can do to get involved with the program, I’ve provided some information at the end of this blog. You can also visit our Give-A-Sh*t page on our website.
So now, with all of that background, I’m very excited to introduce you all to Paige. Paige is the Program Manager for the Young Adult Program at Dana-Farber. She’s worked at Dana-Farber for 10 years, and been involved in the Young Adult Program for the last 5 years. She has her Bachelor’s Degree in psychology and is currently studying to receive her Master’s Degree in Social Work. Everyone - here's Paige!
Tory: Hi Paige! Let’s start by telling us a bit about the Young Adult Program at Dana-Farber and your role
Paige: Sure thing! The Young Adult Program is a psychosocial and emotional support program for 18-39 year olds who have been diagnosed with cancer. The goal of the program is to help individuals manage the emotional impact of a cancer diagnosis at this difficult stage of life. My role, alongside the wonderful YAP team, is to provide the resources that these individuals might need as they navigate the challenges of cancer and help them feel less alone. This includes organizing educational and support programs, resources, opportunities for peer support and giving this group access to the information they need wherever they are.
Tory: To give folks a sense of numbers, how many young adults are part of this program?
Paige: It’s hard to say exactly, as our program offers a variety of ways for young adults to participate and get involved. Dana-Farber sees over 2,000 young adults per year. We try to reach as many of these individuals as possible, but it’s completely voluntary.
Tory: So tell us how you got started with Christina.
Paige: Christina reached out to me a few years ago when STIK was just getting up and running around Boston. She had just held a knitting class for a friend undergoing treatment (Annie Mcnamara Evans), and it was clear that the experience hit home for Christina. We set up a meeting and included our young adult social worker at Dana-Farber to talk a bit more about the young adult population and how this program could serve them. We landed on the Give-A-Sh*t Knit Kits and it took off from there! To be honest, Christina took on everything to get the kits built and organized, and we worked on the logistics to distribute to patients.
Tory: Why did you and Christina decide to partner on the young adult program?
Paige: A few years ago, there was a national movement that came out of research showing that survival rates for older adult and pediatric populations had improved, but there was no improvement within the young adult range. There was a big push to focus on this age group and understand what was happening and how this population could be supported in a better way.
Young adults often fall between the cracks of the pediatric and adult world and we were finding that there was a delay in diagnosis for young adult patients. Emotionally, this group feels particularly isolated, as everyone else’s lives are moving on (friends, classmates, partners, etc.), and their life is a bit on hold. Their cancer diagnosis will impact them for the rest of their lives and it sets them apart from their peers.
Our goal with this program is to create some sense of normalization around these feelings and build a community where they feel supported. We let our patients know that it is normal and okay to experience a variety of feelings. Our hope is to bring young adults together to share experiences and help navigate these challenges.
Tory: Can you share a bit about the experience of a young adult going through a cancer diagnosis and/or treatment? What challenges do they face that are different from other age groups?
Paige: The reality is that young adults are going through so many life transitions as it is without a diagnosis. They are just starting their lives - whether that means they are finishing school or moving to a new city or starting their careers. There’s a lot going on. So a diagnosis causes a disruption in the middle of an already stressful transition time.
Physically, they have to deal with body image changes, fatigue, not feeling well, and/or weight loss and gain. They also have to learn and navigate the medical system, which can be scary and challenging at times. There are financial implications as well - often times, young adults are just finishing school with debt and have minimal work experience, so that can also cause stress.
Emotionally, it can also be hard to relate to their friends all of a sudden, because instead of going out with their friends after work, they are dealing with the side effects of treatment. Some young adults may move home with their parents or other family, and that loss of independence can be very isolating.
Tory: Given all of these challenges, how did you and Christina land on the knit kits? What are the benefits of knitting in these circumstances?
Paige: There are many studies that show that knitting is relaxing. It’s a methodical process that can be quite meditative. It also provides a feeling of accomplishment - there is a start, a middle, and an end to the process of knitting something, and completing this kind of project creates a sense of pride and satisfaction.
We’ve also found that the knit kits provide distractions to what’s going on in our patients’ lives. They become very focused on getting through their cancer treatment, so learning to knit provides the first sense of relief and distraction outside of that. Frankly, we’ve found that it also gives patients a positive boost and an activity to help them participate in the community again
Tory: I know you cannot be too specific here, but could you tell us anecdotally what the impact of the knitting kits has been like?
Paige: Of course! I help with the distribution of the kits, so I have the great privilege of hand delivering them to patients. The first introduction is always fun to see. Patients often light up and get a good laugh at the name of the kit. It’s a nice ice breaker.
The entire kit is a welcome distraction - everything from the bag to the materials to the videos. I find that patients like that it’s an opportunity to not talk about cancer - it’s something fun and mindless.
I recently delivered a kit to a young woman who said, “I’ve always wanted to try to knit. This will be great - I’ve been trying to find a project. I’ve been so bored at home all day.” I also had someone reach out last year who had received a kit - she knit the hat and gave it to her nephew and wanted another one!
The kits reduce the barrier for patients to learn how to knit, which is the best part. The act of going to buy supplies and spending money on the materials can hold people back, but the kits make it easy and accessible (and fun!) to engage with the activity.
Tory: Why is this program unique compared to other partnerships you work on?
Paige: I love, personally, being able to give these out. I feel like this has opened a new door to our program with ways to get creative. Since we met Christina and worked with STIK, we’ve become more open to things seeing how popular, helpful and beneficial the kits have been. We’re grateful to STIK for presenting this opportunity to us and for everything the team has done to keep this going.
To answer your questions, yes - Paige is one of the nicest people we’ve worked with to date. She cares so much about making a difference in the lives of her patients, and we feel very lucky to get to work with her.
We get a lot of questions from customers about how they can provide a monetary donation to STIK to support this program. We feel lucky to have our partners at Lion Brand Yarn, Emulsion Printing, and Hive Studio, who have each already kindly donated their time and the materials needed to help us donate these kits to hospitals, like Dana-Farber.
However, if you know someone undergoing cancer treatment and you would like to send them a kit directly, please visit our Request a Kit page and complete the form. We will reach back out with any questions and will take care of the shipping and handling.
Since starting the program, we’ve donated over 400 kits to hospitals around the country and we’ve sent many more kits to individuals upon request. We hope to continue to grow this number in 2020. Thank you for continuing to support us and our mission to help our friends.